Illness Care
The routines in the illness care category relate to ways members make decisions linked with illness, disease, and/or health care needs. Routines linked with when, where, and how health care services are sought; they determine ways individuals and families respond to medical directives and health information; and determine the ways members care for one another. These routines are related to acute and chronic illness needs, diseases, rehabilitation, and trauma incidents. Key routine aspects are associated with decision-making about who to consult for medical care, ways health care services are used, and the ways prescribed medical regimens are followed.
Some families have routines that might be described as obligatory member roles and responsibilities. One might find kinship rules for care of ill members and expected patterns for compliance with professional care, self-directed care, or family prescribed care regimens. Families have routines related to decisions about which incidents required expert care, if incidents required immediate medical responses, whether symptoms should be observed before action was taken, how long it is okay to wait before taking actions, whether illness trajectories will resolve themselves, and how an emergency response should be handled.
Mothers mostly decided who to consult for medical care, but others including extended family often give input into the final decisions.
Member valuing, availability of resources, support, type of health concern and perceived benefits often influence the use of health information. Knowledge alone does not predict that health information about illnesses or diseases would be incorporated into family health routines. Conflicting media reports about health issues and care regimens sometimes troubled parents even when the information was not related to specific family issues. Uncertainty about the trustworthiness of media reports sometimes weaken the family’s confidence about the reliability of health information.
In Appalachian families, illness often carries an underlying message that ill persons have a responsibility to get well as quickly as possible.
Healthy members understand that they have roles to play in health recovery by assisting ill members to overcome health alterations and regain usual functional abilities. Ideally, individuals are expected to recover without passing the illness to others. Parents often suggest to sick children that they need to get well so that they can go play. Family members cooperatively assume responsibilities and caregiving that assure roles family resources attend to members’ prescribed care needs. While others are permitted sick days, mothers might perform usual roles even when they are ill. They often report tending to some family tasks even on days when they experience sickness. While some Appalachians may still use folk medicine or home remedies, most know little about such treatments. However, many are inclined to self prescribe, use over-the-counter medications, and share prescriptions leftover from other family members or previous illness experiences.
Many family members have physical symptoms for a long while prior to medical experts being consulted. Sometimes symptoms are quite severe before medical care is obtained. One mother whose husband had died described regularly urging him to see a physician for rectal bleeding for several years before he went for care. By the time of diagnosis, the disease was far progressed. In another family, a mother ignored symptoms that included vaginal bleeding even though her husband and children encouraged her to see a physician. By the time she sought medical care, the disease was too advanced for effective intervention. Even when seriously ill members had health information and understood the associated risks, many still delayed seeking medical care. For instance, a grieving wife with knowledge about the importance of following her medical regimen for diabetes repeatedly referred to her obese condition, diabetes and severe arthritis, but denied that non-adherence to her medical regimen was deleterious. She did not seem to connect the fact that her routine of poor nutrition, inactivity, and laxness in taking prescribed medications was harmful to her health.
Families where a member had a chronic illnesses or a developmental delay had more rigid forms of family routines than those coping with acute conditions. In the family health research, it was surprising to identify that in supposedly well families that so many had members with chronic conditions requiring prescribed medications and illness care regimens. Persons with chronic conditions such as diabetes, hypertension, and even children with developmental delays often viewed themselves and were viewed by others as healthy. The family routines appeared to support individual needs based upon the severity of their functionality and the unpredictability of the condition. The more able adults were to participate in usual activities, the less likely others appeared concerned about adherence to a medical regimen. However, some families were especially concerned with children’s symptoms and were tentative to medical needs. Families with members that had chronic conditions often talked about ‘healthy’ versus ‘less healthy’ days. It was during acute episodic conditions that other family members viewed members as ill. In disadvantaged families, many had one or more members with conditions that required medical or professional care. However, these families had fewer resources and seemed to report greater difficulties following prescribed regimens than other families (Denham, 1999c).
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